CMC professor explores ‘Politics of Autism’ in new book
The Politics of Autism provides a view into the ways we try to acknowledge and support people and their families whose disability makes navigating a complicated world even more complicated.
It’s a messy proposition, because nothing in the situation is uniform, beginning with the condition. After all, people with autism fall into a spectrum that can find them unable to communicate at all or eloquent enough to share their stories for literary or political ends.
Mr. Pitney, a professor of politics at Claremont McKenna College, was inspired to write the book because someone close to him has autism, but it’s not autobiographical.
“There are a lot of good first-person accounts. There are plenty of those books,” he said. “What I thought was needed is for someone to put together what we know about autism policies and what the government is doing on various levels.”
When a parent receives a diagnosis that their child has autism or suspects their child may have the disability, they crave guidance, according to Mr. Pitney.
“That’s something the people in the community need, direction about what services are available and what kind of help is out there,” he said.
Unfortunately, the answer is convoluted. There’s no sweeping federal policy for the diagnosis and treatment of autism. Instead, it varies from state-to-state, county-to-county.
In California and in many other states, a toddler with autism receives services from a regional center. In some cases, however, families find their children on long waiting lists for services, which precludes them getting help during the earliest stages of diagnosis.
After age three, the school system assumes primary responsibility for autism services. Then, at age 22, that responsibility is transferred back to the regional center, at which point Mr. Pitney characterizes the level of assistance provided as “hit or miss.”
In Politics of Autism, he quotes Illinois state representative Patricia Bellock who says, “We call it falling off the cliff. We can keep them in school until they’re 22. After that, there’s nothing for them.”
Mr. Pitney emphasizes that the support each individual and each family affected by autism receives varies widely, from region to region, from district to district, from school site to school site and from case to case.
There are some people out there who say they have been able to get rid of their child’s autism through complementary therapies such as a diet change. The most well-known of these is celebrity Jenny McCarthy, whose approach has created outrage among many in the autism community.
Most people, however, say there is no cure for autism spectrum disorder. What most people agree upon is that interventions—such as speech, occupational or behavioral therapy—can be very beneficial, and the earlier such services begin the better.
Decades ago, people with autism were assumed to have mental retardation or mental illness. A common course of action was to commit them to an institution. Nowadays, a more integrative approach is advocated, which sees the person with autism living at home and attending school. Whenever possible, the goal is to mainstream a child’s education. In most cases, kids with autism attend a public school, spending as much time as possible in classes dominated by peers without autism.
It’s not cheap. Many kids with autism require a one-on-one aide in the classroom, as well as ancillary services like speech therapy and adaptive physical education. It all starts with the students’ individualized education program (IEP).
Some districts are pro-active and provide a strong education to students with autism. In other cases, parents have to fight for accommodations, going so far as to have legal counsel or specialists attend their IEPs. It’s easy to understand why a district might balk at coverage, considering that—despite the fact that schools must give a fair and equal education to each student, providing any necessary accommodations needed to nurture disabled students—students with disabilities receive only 19 percent more funding from the federal government.
“The way the Individuals with Disabilities Education Act is structured, it puts a lot of pressure on parents to be advocates,” Mr. Pitney said.
Some parents are more successful than others at getting the services they feel their child needs. Parents who are highly educated and affluent seem to do better, because they tend to be more knowledgeable about the child’s rights and often have lawyers and medical professionals in their social circles. Low-income and minority families tend to be at greater risk of falling through the cracks.
The disparity is so great that some advocates tell parents if they don’t want to be pushed to the side, they should present themselves as affluent, aware and unafraid. In Mr. Pitney’s book, he shares the advice of Carmen Carley, a professional autism advocate in the state of California: “Wear a fake diamond ring,” she tells mothers who lack a real one. “Make them think you’re ready to fight. Don’t show them you’re weak. Don’t show them you’re tired.”
It takes even greater advocacy and in some cases agitation to get insurance companies to foot the bill for therapies. In many cases, companies with an eye on the bottom line deny families’ funding or reimbursement for all but the most medically obvious treatments. The problem with this approach is there is no medication or surgery that has proved effective in the treatment of autism. The treatment is therapeutic and, again, therapists cost.
To complicate matters, a child may make great gains with one therapy, yet another will suffer deficits under the same program. There’s no one approach that works with all kids on the spectrum.
Mr. Pitney points to the cost of Applied Behavioral Analysis, a commonly used therapy that is controversial, but which many autism families swear by.
“An intensive program may take 25 to 40 hours a week of one-on-one attention for one to three years, with rates starting at $50 an hour,” he notes in his book. “More than 30 states have enacted laws requiring health insurance companies to cover behavioral therapy. With autism, though, a ‘mandate’ on the insurers is not a ‘guarantee’ for the parents, who often have to fight insurance companies in court to ensure compliance.”
Although highly effective, less mainstream therapies like Floortime—a developmental individual-difference relationship-based model (DIR) created by child psychiatrist Stanley Greenspan—aren’t covered at all.
Mr. Pitney admits his book is no panacea, writing, “Nearly every page of this book has suggested unanswered question. Some may not even be answerable.”
What he is sure about is that whenever possible, autism policies and politics should be devised with the cooperation of people who have autism, have a loved one who’s affected or are at least willing to walk a mile in the moccasins of those in the autism community.
“It’s important to take into account the perspectives of autistic people themselves, which tend to get lost sometimes,” he said.
Mr. Pitney is pleased to see that a growing number of people are aware of autism, making them more sensitive to those who are on the spectrum and more open to political expedients such as legislation and funding.
And he has seen first-hand that with proper intervention, the outcome for people with autism can exceed all expectations.
“Here in Claremont, there was a time when people with autism wouldn’t get to college,” Mr. Pitney said. “Now, some of my students have autism.”
The Politics of Autism is available through Amazon and most major booksellers.